THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

You know the drill: when they tell you that you have the dreaded C, the earth falls away beneath you. I was first diagnosed in November 2008 after a needle biopsy. One core out of 15 showed cancer.

Both my younger brother and father have survived this ordeal. My brother (at 49) opted for the surgery and my dad (at 75) for hormone and radiation.

So here are my stats: Gleason 6; at diagnosis PSA 3.3 up from 2.7 (PSA now back to 2.7); Doppler MRI ( done December 2008) showed nothing i.e. no observable mass; location : Transitional Zone.

The options that appeal to me are : WW (aka Active Surveillance) ; the surgery; or HIFU (which is available in Toronto at a cost of C$22,000. The first simply means a Damocles sword hanging above me with the inevitable need to do something; the second, well you know what that entails, but at least statistically means something close to a long term cure; and the third seems to me to be the least gruesome but has not been proven as effective (at least long term).

My doctor, who does both HIFU (at the Toronto clinic where he is a partner) and surgery at the hospital, tells me that if I choose HIFU, he will do only one lobe....(I am not certain if that means that I will retain some function).

I am very undecided. The HIFU testimonials on this site certainly convince me that it is really no better in terms of recovery than surgery.

If anybody has any thoughts I sure would like to hear them.

Thanks.. and BTW, this is an extraordinary site and I thank the heavens that I stumbled upon it.

I met my urologist Dr Neil Fleshner at Princess Margaret Toronto today and told him that I had elected to continue with WW/AS. If the cancer turned more aggressive, I would opt for the Da Vinci procedure. He seemed content with the choice.

Here in Toronto there are two Da Vinci machines but they were acquired about two years ago. The significance is that the surgeons here may not have acquired sufficient experience. That is not to say that the surgery they perform is below standard, but rather it seems intuitive that the more experience the surgeon had the better the chances of a better outcome.

The active surveillance requires PSA tests every three months with an annual needle biopsy (this November). In the meantime I have started a regime of vitamins, exercise, and taking it easier at work. I am confident that none of that will matter, but it empowers me in any event. I have also begun reading Servan-Schreiber's book Anti Cancer which is somewhat inspiring.

My brother, also a survivor who opted for the traditional radical surgery ( PSA rose from 4 to 9; Gleason 7 ; post op pathology found that the cancer had penetrated the capsule) five years ago, feels that I ought not to wait and that I should do the surgery now...I appreciate his concerns, but I have decided for now to watch and wait...will post my PSA scores when I get them....

Later: Latest PSA count is 2.4, down from the initial diagnosis of 3.3.

I don't know what to attribute this to, and I am not sure if this is even significant. If I had to attribute it to anything, it might be the exercise, diet ,and vitamin regime I have put myself on. I am 5 foot 11, and 165 lbs but very much out of shape. I have joined a gym and engaged a trainer to build stamina and abdominal strength in preparation for surgery if and when it comes down to that.

I have cut out red meat, white flour products including cereals, breads, sugars, potatoes, all oils except olive and canola and I have reduced intake of coffee. I am consuming more vegetables and green tea, The only animal protein I have is chicken and fish. When I shop for foods I look for Omega 3 based products.

My vitamin regime is D, D3, Omega 3 and Flaxseed Oil along with B and C.

Back to see my urologist in May.I have found a Dr. Patel in Orlando Florida who claims that he has done more Da Vinci surgery than anyone else. The cost is about $35,000 but I will cross that bridge when I come to it.

May 28, 2009: Just received the results from the latest PSA test: down to 2.5 from 3.3 at diagnosis last year....in any event, my doctor has fixed August 24 2009 for my next biopsy...can't wait for that one. Hopefully the Gleason Score has stayed put and the cancer is not getting more aggressive.

In the meantime, I remain on my diet of vitamins ....doubt it does much good but who knows.... I will check in again in August...

It just gets more confusing.

I had the needle biopsy (again) last month and another blood test...and what a joy that was. After what seemed to be an eternity of waiting, I met my doctor today. I was ready for the worst and was prepared to do the Da Vinci laparoscopic thing....here is what he told me: PSA has settled down at 2.4 and here is the funny thing: out of 12 cores, no cancer..."What?", I said! "Oh!, don't worry its there, its just that the needle biopsy didn't pick it up"...plenty of PIN (prostatic intraepithelial neoplasia) (I think that's what they called it) i.e. pre-cancerous cellular stuff, but no Gleason 6 this time around.

"Now what?", I asked..."We wait and test you again in January"....

So here is the new normal: I have cancer; it may be indolent; I am going to continue to watch and monitor...in the meantime, no red meat, lots of colours, increase in exercise, take lots of green tea extract, omega 3, saw palmetto, Vitamin D and E, and go on pretending that some of this nonsense works...but at least I can live in this world of make believe for now....its five minutes to midnight and the governor called...for now...

Gary

So here is the latest statistic: PSA has settled at 2.4. I continue with the no red meat, multivitamin regime and struggle maintaining my exercise regime. The stress levels at work are high and I am often sleep deprived.

My doctor recommends a six month wait and then another PSA test and biopsy. I asked him how many times that gland can be poked and to my surprise he said that it can be often biopsied.

So I continue to stay the course. I have found however that my libido has started to lag. My girlfriend is very patient and blames my stress levels at work. I fear that this long running drama with prostate cancer is taking a psychological toll. I raised this with my doctor and he opined that every man approaches PCa differently. The ever constant fear that this seemingly indolent disease, at least for now, could suddenly ramp up (as it did in my brothers case) may be there in the background. I suppose I shouldn't self diagnose and maybe get some help.

By the way, there is an experimental program conducted by Dr. Trachtenberg here at the Princess Margaret Hospital in Toronto. Using a real time MRI guided probe, a surgeon uses a laser tipped probe which zaps the tumour only, not the entire gland. the advantage over HIFU is accuracy (imagine a stick in a marshmallow), i.e. the prostate movement is minimized. I am not a candidate for this because at the moment I have no discernible tumour...the cancer is there but has not massed yet. [I was unable to find any details of this program, but there is a reference to his work which involves photodynamic therapy].

So that's it from this end (so to speak). I wish all my Yana brothers a Happy New Year and best wishes. Terry u r a saint and thanks to you I have shared many an e-mail with other members.

I have been a bad boy...stopped going to the gym...took the vitamin regime only intermittently and began to put on weight...my reward? PSA went up to 3.4 and my treat was another biopsy two days ago..results in mid-September..stay tuned...

The dreaded biopsy done, I was sitting before the doctor waiting for the dreaded news....because my PSA had risen again, I figured that the biopsy results would not be favourable....the answer: negative ...what??? negative...lots of PIN (prostatic intraepithelial neoplasia) but no cancer....its there, he said, but the biopsy did not pick it up.....so in six months another PSA and biopsy..... how much abuse can the little walnut sized thing take anyway??? [Two points strike me from Gary's update. The first is that a 'rising' PSA [Gary's PSA is now at the same level as it was in November 2008] must mean an unfavourable biopsy result, yet PSA is NOT prostate cancer specific - see PSA 101. Secondly if the tumour is so dangerous how come the biopsy procedures keep missing it? Can it really be growing and present a threat or could there, perhaps have been spontaneous remission? Not as rare as you might think - see this exchange.]

So that's where I am folks.... waiting ....waiting.....this is the second consecutive biopsy with negative results....I will report back in six....in the meantime to all my brothers and the sisters that love us, stand tall...

Had the dreaded biopsy again...I feel like a pro....there were other guys in line for their first...I tried to be reassuring... I am still experiencing blood in the urine but that too shall pass (no pun intended)

I saw a fascinating podcast on TED involving colour coding cancer tissue during surgery. It got me thinking why the same procedure could not be used in lieu of needle biopsies: create a phosphorescent dye that only cancer cells pick up and see it on an MRI (or some such device) in lieu of the biopsy...that would have my vote....

Anyway results due on January 31 and will report to all then.....may the force be with all of us....

The saga continues.....after another biopsy (with the usual gruesome consequences) I attended the doctors office to get the news....not sure what I was expecting....but the news was just as confusing: biopsy was negative....again....I must say I am confused but my doctor says he has seen it all before...low level cancer that does not appear to be moving much....so the regime continues: PSA tests every six months and another biopsy this time next year.... and so it goes.

After receiving a PSA score of 3.6 (up from 3.2) three months ago, my doc sent me again for another blood test. I have had a history of low testosterone so I asked for an update of that. Just saw him and the results are: PSA 2.7 and testosterone normal. Based on this, it is recommended that I stay on Active Surveillance and no biopsy until sometime next year or perhaps the year after. In the meantime, I watch the diet, continue to avoid and hate exercise, and take my vitamins. The good thing I guess is that I don't need a biopsy (ugh!) for a while......

My last PSA showed an increase and for the first time I am in the 4+ land. That threw me for a loop so on my own, I asked the Doc for another enjoyable biopsy which is now scheduled for January 2014 (my post holiday treat!). In the meantime I live in binary of hope and despair. My 81 year old uncle just died with (but not of) stage 4 prostate cancer, but my 92 year old dad motors on having had his first prostate cancer treatment some 25 years ago... so stay tuned and I will report back with my next results......all the best to my brothers out there.

Well here's a kick in the pants. After my PSA; went up to 4.3, I decided to have, yes, another biopsy. The week before that I had another PSA; test and the result was now 9.

Needless to say, I am downhearted and awaiting the biopsy results. It may be time to select another treatment. Stay tuned

So now I have the biopsy results: negative. Again. I asked my doc to explain how I can have a 9 and that result. No evidence of infection or other condition. Didn't get an answer that satisfied me.

And so it goes. More PSA; testing in June.

So my PSA; rode the rollercoaster from 9 and then down to 5. My Doc told me that I should take two tests: one a urine test developed in California and another MRI. The first was simple: the prostate was "massaged" before urination and tested. The second which took quite a while to perform was supposed to detect very small lesions. The first came back negative but the second showed two lesions. As a result of MRI, I chose to have yet another biopsy round but this one was directed to the location of the two lesions. I expected the worst. But to my utter suprise the biopies came back negative.

So now its back to the drawing board. More PSA tests in June 2015. And so it goes.

Gary's e-mail address is: garycaplan AT rogers.com (replace "AT" with "@") (but this e-mail address may no longer be valid)

NOTE: Gary has not updated his story for more than 15 months, so you may not receive any response from him.